Lila’s mom Sarah remembers where she was when she got the call she’d been dreading about her daughter, Lila. She and Lila had just left the hospital after a bone marrow biopsy – a test doctors were using to figure out what was causing Lila’s high temperatures, lethargy and abnormal blood tests. They were getting on the freeway when Sarah answered the phone.

“We have the results… and you need to come back right now,” the voice on the other end of the line said.

“My stomach dropped,” Sarah said. “My husband and I just looked at each other and I remember thinking – our lives are about to change right now.” Her diagnosis – acute lymphoblastic leukemia (ALL). Sarah remembers being both devastated and relieved – originally, Lila’s doctors didn’t know what kind of leukemia it was, and if it had been acute myeloid leukemia, (AML), treatment would not have been possible for her.

A Complex Case

Medical challenges are not new territory for 14-year-old Lila and her family – she had a stroke before she was born, she is non-verbal and is only fed through a g-tube. She has been diagnosed with Quadriplegic Cerebral Palsy, meaning she has a hard time moving her arms and legs, as well as Dystonia, Scoliosis and more. So when leukemia was added to the list, Sarah was terrified – childhood cancer is already so rare and hard to treat, and Lila’s other diagnoses made this situation unique.

“I asked every doctor, ‘Have you ever treated a child like her?’” Sarah remembers. “She’s just so fragile, it was hard to grasp that this could happen to her as well.”

Starting treatment for Lila felt like navigating in the dark – doctors know how to treat kids with ALL, but treating ALL in Lila was a different story. During the first stage of her treatment, called the induction phase, Lila started cognitively declining. Her usual smiles and happy sounds were gone. Her legs, which used to be able to kick when she was excited, were ragdoll-limp. Sarah could tell when she was in pain, but Lila’s cries were silent – it was heartbreaking to watch. Sarah said it would be hard for Lila’s team to tell if her chemotherapy was causing this – because Lila’s “normal” is different than everyone else’s; an MRI couldn’t tell them anything because they didn’t measure her baseline before treatment started. Her recovery was slow, and the smiles eventually came back – but Lila made Sarah work for them.

“If I get super loud and super weird, I can get her to crack a smile,” she said. “I perform ‘Ain’t No Mountain High Enough’ for her with a lot of goofiness and she loves it.”

Essential Family Support

Sarah says her family has been an essential support system throughout Lila’s life, and even more since her cancer diagnosis. Her sister, Stephanie, is a constant companion, coming over to watch shows with Lila and read her books. Stephanie is always willing to dive in and research resources that could be helpful to Sarah. Lila’s Grandma Cookie keeps Lila’s nails painted and always in season. Lila lights up every time her stepdad, Brandon, comes into a room, making a chomping motion to show she’s excited to see him.

“I can only really focus on Lila, that’s all I have the time or energy for. I often think about people in my situation who don’t have anybody… when I’m falling into a dark place, I remind myself how lucky I am to have all the people who support us.”

When Lila Lights Up

When Lila is feeling well, she loves being in groups of people – Stephanie and Sarah say she loves listening to any juicy gossip or drama, and she’s eager to get back to high school when she’s well enough. Despite her mobility issues, Sarah says she’s a bit of a thrill seeker – she started riding horses through equine therapy at age 5. She eggs Brandon on when he’s pushing her wheelchair fast by giggling excitedly. Stephanie says she’s a girly girl – she loves having her nails painted and wearing jewelry.

“If we go shopping for new clothes, we show them to her and she lights up – she’s a fashionista,” Stephanie said.

“It’s Because of Lila”

Lila’s future is a question mark – her doctors were worried that more chemotherapy would be too hard on her, so she went right to an immunotherapy treatment – something that is typically reserved for kids whose cancer has returned. If this treatment doesn’t work, Lila is out of options. Sarah says the uncertainty and Lila’s poor prognosis makes her feel alone – but also motivated to create something better for the next kid in Lila’s situation.

“I want to tell Lila’s story because it is such a rare case. I want to find someone similar or help someone in her situation in the future, because right now, I feel so alone. My hope is that doctors can learn from her, and if someone like her is diagnosed in the future, they can look back and say we know what to do because of Lila,” Sarah says.

The uncertainty, and the daily grind of sorting meds, anticipating complications and being the primary caregiver for a medically complex child has been grueling for Sarah. But she says recently, she’s allowed herself to be proud of what she and Lila have made it through.

“When people would tell me ‘you’re so strong,’ I’d think, ‘Sure, that’s very kind, but I’m just doing what I have to do.’ But since the ALL diagnosis, I feel it. I feel strong, and I’m glad people see it. I don’t feel this way every day, but in the grand scheme of things, after everything we’ve been through, I’m proud of myself. And I’m proud of us.”